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Thyroid update 5

Almost a year has passed since I last posted about my progress with Graves Disease. I know the subject doesn't interest most people, but just this week I heard from a long-time reader who had a few questions. She, like many, skimmed my earlier posts with little interest. That is, until she received her own Graves Disease diagnosis. She appreciated reading the perspective of another active outdoor enthusiast, which is what I hoped to achieve with these updates. And it just so happened that today was my sixth-month check-in with my endocrinologist.

The verdict: I am officially in remission! (Currently. Autoimmune diseases can always come raging back with new issues in tow. I also carry antibodies for Hashimoto's Disease, so I am just as likely to swing hypothyroid. But for now, all is well.)

When I tested with mid-range TSH in November, my doctor advised me to try going off the drug I was taking to regulate my thyroid hormone production, methimazole. My TSH dipped again in December, but now it's up to 3.2 — well within the healthy range of 0.45-4.5 — and all on its own volition. In fact, I've been more or less drug free since last fall, as that was also the time my allergy doctor had me go off of Singular and daily use of Claratin. It's been really strange to not visit the pharmacy every other week. I had to find new stores to buy personal products and cleaning supplies.

I made a little chart of my 27-month progression for the few readers who might be interested. Everyone else should scroll to the end of this post, for pretty snow photos.

The purple line represents TSH levels, and the blue bars are T3 hormone levels. I also had T4 tested, but didn't include it, as those fluctuations are more or less redundant. The purple boxes indicate the amount of methimazole I was taking during each period, and the light blue box is the happy range for T3, the active thyroid hormone. The happy range for TSH is anything above 0.45. It's a little hard to discern on this graph, but I didn't reach this milestone until May 2018.

In February 2017, my T3 was off the charts, and I felt terrible. My resting heart rate was 85-95, my hair was brittle and breaking off, my cognitive awareness was blurring, my emotional state was deteriorating, and I was wired but tired all the time — sleeping poorly, anxious, and when I finally set out to exercise, I had no energy to do so. At the time I was so delusional that I thought I was training to ride my bicycle across Alaska, as I had done in 2016. There were a few rides where I'd set out, take as much as 45 minutes to slog to the end of the road just three miles from home, and decide that I was so wasted that I needed to turn around and go home. I'd cry about it in the privacy of my bedroom, but I'd still tell myself I was "just having a bad breathing day" and vow to try again the next day. I was in a pitiful state of try-hard delusion.

Whenever I complained about my symptoms, I mostly heard "overtraining" and "altitude" as reasons. It took my endurance-cycling Alaskan physician friend Corrine — who in 2018 finished the Tour Divide at age 59! — to first observe the bulge in my neck (a swollen thyroid gland, also know as a goiter) and ask me if I'd ever had my thyroid tested.

This was early February 2017. I went to see my primary care physician the following week. After lab work came back, I was fast-tracked through a specialist, more tests and ultrasounds to determine that under no terms was I capable of racing across Alaska in three weeks' time. Had I actually attempted the 2017 ITI, there's a reasonable chance I would have died. It sounds overdramatic to put it like that, and it is. But my odds of experiencing a thyroid storm or heart episode at any time or place, including the middle of frozen nowhere, were not low.

Instead, I dropped out of the race and began treatment with a thyroid-hormone-suppressing drug, whose main side-effect is that it can cause liver damage. As the chart shows, this worked quickly for me, and my levels were never dangerously high after I started taking methimazole. I did remain hyperthyroid for most of the following year, with wildly fluctuating symptoms that didn't necessarily coincide with my thyroid levels. Breathing difficulty — which I still consider my most prominent physical health issue — continued at intervals throughout 2017 and 2018. These slumps were frustrating, but did seem to lessen as time went by. Especially later in 2018, when I was drug-free and my levels were normalizing, my slumps were shorter and less severe. However, they were still concerning enough that I decided against racing the Tour Divide in 2019. I've had trouble breathing as recently as the first week of March, and I do expect to falter again. I'll likely never be all the way free of breathing difficulty. But the long-range perspective is "undulating toward normalcy," and it's heartening.

Because of my allergic asthma, the fact I live at 7,200 feet elevation, and the still-likely scenario that I'm a little too active for my own good, I don't know how much my breathing issues are caused by thyroid disease versus anything else. But I do know that I feel a whole lot better and stronger than I did two years ago. The only aspect of my lifestyle that has consistently changed in that time is traditional medical treatment for thyroid disease and allergies (via immunotherapy, which seems to have been quite successful in tamping down my body's overreactions to the green seasons.)

I've also written a little about mental health as it relates to thyroid disease. I believe this is a bigger issue than most specialists make it out to be, but I realize every person's experience is different. When I was embroiled in the darkest days of Graves Disease, in the winter of 2016-2017, I struggled with a depressive state that heavily reduced my creativity and capability for joy. I blamed this state of mind on the political climate that was bursting to the foreground at the time, as well as stress about life, my faltering fitness and the upcoming Iditarod race. I realize now just how much my mental state has shifted — when, again, little has changed in both my life or the state of the world. I've been treated for thyroid disease, and it seems for this reason alone, my mental health is considerably better.

I do still deal with mild anxiety, which infrequently flares up with little provocation into a low-level panic, considerable shortness of breath and some chest pain. At first I'd feel these symptoms and think "oh no, thyroid storm." There may be some connection still, as I probably experience occasional bursts of hormone overproduction caused by stress. I've been using CBD as a regular supplement since my last anxiety episode in September, and have had considerably fewer issues since. How much reduced anxiety coincides with CBD use or Graves Disease remission, I don't know.

Okay, scrollers. Here is the photogenic part of the blog post. We received another spring snowstorm this week, and again, I was thrilled. By now, most of our friends and neighbors are tired of snow. Winter weather has already stretched across seven months, and this late-season snow isn't the recreational type. It has a high water content and covers long-thawed ground, which translates to sticky sludge on top of the sloppiest mud. Even trucks don't handle the conditions all that well (based on the number I've seen stuck in ditches recently.) But there's such beauty and novelty to a May storm. I watch each one with a sort of pensive longing, because this must be the last (and eventually, it will be. This storm, which was May 9, is a very likely candidate.)

I set out for a morning hike. My destination was Bear Peak, a six-mile route that I can usually "run" in 90 minutes. This excursion took almost three hours. Breaking trail through 6-8 inches of spring snow doesn't sound like much, but it was a mighty slog. Snowshoes wouldn't have helped, because the wet cement snow stuck to everything like, well, wet cement. I fumbled to find the route up the west ridge of Bear and ended up skimming a scary ledge. Back on the trail, I kept tripping over rocks that I couldn't see. My fingers throbbed with pain because of these frequent stumbles, grabbing bare handfuls of snow, while my core was still too warm and brain too stubborn to bother with the mittens in my pocket.

Still, I was so happy. Why? I don't even know. This is one aspect of my personality that I've stopped questioning. Let the soft animal of my body love what it loves. And hope my wonky hormones don't get in the way.

Frequently I stopped walking and stood in place to listen to the gentle hiss of snowflakes falling through an expansive silence. This must be one of the most beautiful sounds. I was so grateful for this opportunity to soak in the final snow of the season. Unless there's another. There can always be hope for another.

13 comments:

So stoked and envious that your thyroid has normalized!! I hope you can keep yourself in that "zone" as time keeps moving on. I think your chart is a great window to view changes over time. Is there any correlation that you saw with your training volume/intensity to your rebounding TSH levels? Or diet, rest/recovery time? I saw you had a rise in Nov 2017 then a fall the next month before it started to rise again. I seem to see in myself a 3 to 4 week wave with my hypothroidism mental state. I should copy your tracking graph this summer for my own self, never thought about it.

"I stopped walking and stood in place to listen to the gentle hiss of snowflakes falling through an expansive silence"Jill Homer

Wow! I could never describe the experience of being in the woods during a snow fall..... I really like that visual you paint! Thanks!

The fluctuations in my graph are mainly caused by changes in methimazole dose. When dosages were reduced, my levels went up for a little while. I did some experimenting with diet and supplements, but wasn't consistent enough to draw any conclusions. If I ever have a major relapse or swing hypothyroid, I've resolved to at least give the autoimmune protocol a try. But with this simple medication working so well and consistently, I admit my motivation to make major diet changes has been low. I also am more of a skeptic in this regard. I believe in the placebo effect, and the benefits of nutrients, more than I do in the notion that giving up gluten can solve all problems. (However, I am a big fan of CBD, which could well be an expensive placebo. So go figure.)

I have been tracking other metrics such as resting heart rate, exercising heart rate / volume / stamina, and blood pressure. All of these have been improving consistently. None of my tracking has helped me draw helpful conclusions on what causes my slumps, but they do follow a reliable pattern. Your waves are 3-4 weeks. Mine are 4 months long. But why this is, I don't know.

Wonderful news Jill. It was heartbreaking to read of your seemingly endless frustration with your body. Onwards and upwards. I never see snow but I'm sure I would be as excited about a May fall as you have been. I too love your description of the "gentle hiss of snowflakes falling through an expansive silence."

I've tried several different products, but mainly the 50 mg hemp extract capsules from UnCanny Wellness. The reason I prefer this product is because it's water-soluble, for better absorption, and the full-spectrum compounds. I will admit that the research is limited on the effectiveness of various CBD products. But the reviews I've seen are largely positive.

We generally get this from Alfafas, one of the more "cunchy" local grocery stores. We used "UnCanny" hemp capsules, which claim to be water-soluble for better absorption - who knows. Seems to work. Last time I picked up a different brand, "Functional Remedies" hemp oil capsules since they were out of the other brand. Jill seems to have success with either. I got 25 and 50mg capsules to experiment, not sure if there was much of a difference for Jill (other than the latter being a lot more expensive of course). As both products are pricey, we are looking for some cheaper alternatives - though it seems it's just expensive for now.

Wow, that's fantastic Jill! So, can we (your dedicated 'living vicariously thru you' readers) plan on dot-watching you doing another Tour Divide in the next year or 2? (I seem to recall that was when all this really started...in the dust/pollen-bowl of Wyoming that year). Good for you...enjoy it! And who knows, the mental boost of knowing you are in remission might give you wings you haven't had for years! Be safe in Zion and KILL IT!

Just chiming in (late!) to thank you for writing about your journey with autoimmune disease and allergies, etc. So many of your symptoms have been so familiar to me, and just last week I found out I have hypothyroidism with antibodies (I think Hashimoto's but they didn't tell me specifically). Getting the diagnosis would have been so much worse if it weren't for your blog. I just tell myself even super athletes like Alaska Jill are broken. It definitely helped my mood last week which could have easily spiraled into anxiety about being 38 and falling apart in various ways...

Ugh, sorry to hear about your diagnosis. This sounds like Hashimotos, completely treatable, but it will take some time. I'm glad you got a diagnosis and you're on a good path now! And yes, I very much sympathize with the anxiety of falling apart in my late 30s. I'm glad I'm in a good place right now as I stare down my 40th birthday. You will be there soon, too! Healthy, I mean. And 40. :)

Hey Jill, I just wanted to say thanks for writing these posts up. I just found out I have hypothyroidism and my very first thought was "I have to go back and read everything Jill wrote about thyroids":) I'm not excited about the process of trying to get the levels correct, but it's good to at least know what the problem is.